About Me

I am a girl who fell in love, got married and wanted to have a regular ol' ordinary family. What I ended up getting was everything but.
This blog chronicles our journey as a family who was blessed with a very special child.
From the day we found out that she had only a 5% chance of living to the present, life has been a true roller coaster of emotions. And most surprisingly, more rewarding than I ever thought possible.
Click here to contact me.

The Harlie Fund

Due to the requests of many caring people, our family set up a legal trust fund, "THE HARLIE FUND" to help with Harlie's care. You may click here for more information or click on the donate button above.

The Harlie Crew

We invite each fan of Harlie to join the following initial crew members and commit to make a monthly contribution to The Harlie Fund.

With Christy's willingness to share, we have worried about, prayed for and rejoiced in the accomplishments of a remarkable girl. The members of The Harlie Crew together show their support by contributing monthly. If you would like to join us, please call Bill Jeffries at (804) 288-1672.

Monday, August 20, 2012

I can't believe it's been so long since I last blogged. Time seems to be flying by. We've been busy. Somehow every day has filled up with stuff - and not necessarily fun stuff, either. I really wanted to be able to relax a little and just enjoy some time with the kids. After all, for us there is only a few more days of summer. In fact, the boys leave to go and stay with Grandma (Tom's mom) on Wednesday!

We did manage to get in some fun... on Friday, me, Terri (our nurse) and Maggie (my niece) took the kids bowling. Thanks for the great suggestion Bethany!

One thing I've really been struggling with this summer is handling germ exposure to Harlie. Do I put her in a bubble and not let her do much or do I let her have fun? It's something that goes through my mind constantly.

To get serious for a second (not usually something I like to do) after our experience with her cardiac arrest in the OR two years ago, I can't help but be fearful that something really bad could happen. I've linked back to that post so many times. I'm sick of hearing about it myself! And I keep thinking, Geez! Get over it, Christy! It was two years ago for crying out loud!

But, I suppose almost losing your child sticks with you for a while. I can remember each episode that could have gone the other way (and yes, there's been several!), like it happened yesterday. Especially when she's scheduled for a 10+ hour surgery. That's a looooong time and a lot can happen in that time frame. Not to mention the balancing act for the first 24 hours after coming out of the OR. In the OR they will load her up with fluids and then the next day the challenge will be getting that fluid out of her. Not to mention pain management (that's been scary in the past, too!). So, yes, I am terrified. And can't help but think, What if the worst happens? And I made her live in a bubble and didn't let her have any fun? Those are some crummy thoughts to have stuck in your head.

So, I took them bowling. They LOVED it. The last time we went bowling was when Murphy turned five - it was his first birthday party out of the house. That was three years ago! Well, Harlie remembered exactly what to do. She carried the six pound ball to the line, gently placed it on the ground and then pushed it with both hands down the alley. All by herself. And then she would turn around to walk back and smile proudly. It was really cute.

Cooper would roll the ball down and then run to the ball return and hold his hands right there ready to catch it. But the ball would still be rolling towards the pins. I laughed every time. He cracks me up. Everyone had fun and I will have to remember to take them more often than once every three years.

So, yes, the big surgery is Friday. This Friday. Holy cow! The past few days she has been pretty junky. Last week when I took her to her ENT follow-up appointment we discussed that her secretions were really sticky. So, her ENT said to increase her water flushes by a fair amount (like 10 ounces per day). That would mean she should get 35 to 40 ounces of water per day, which seems like a lot to me. She only weighs 37 pounds and I know for a fact that my boys don't drink that much water - or even close. But, we did it. And I really think it was too much for her. I think she may be a little fluid sensitive. My guess is her lungs just can't process that much fluid. Her secretions were no longer sticky - but now they were more than plentiful! Ugh. I'm not sure which is worse! For several nights we had to get up to suction her like 20 freaking times. Which is pure torture in my opinion. I would just lay down and fall asleep and I'd have to jump up and run in there to suction. Then go back to bed, just fall asleep and it would happen again. And again. It was awful. I increased her breathing treatments and the past few nights have been better. But, I'm still holding my breath and hoping and praying that she doesn't get worse.

So the plan now is that Tom will drive the boys to meet his mom halfway to Pittsburgh on Wednesday. They will stay with her from Wednesday to the next Friday. They are going to visit their aunts and cousins who they don't get to see very often, so they will have a lot of fun. Then she will drive them home and stay with them here until we get back.

We leave on Thursday. We bought one way plane tickets since we don't know when we'll be coming home. Tom is busy working on the Ronald McDonald House renovation and he said if he can get that project to a certain stage before Thursday, then he should be able to stay in Boston the whole time. I really, really hope that happens. He has not taken off that many consecutive days off from work in years and years. In fact, the last time we had a vacation I was pregnant with Cooper (that was the summer of 2008) and even then he would drive to work for several hours some of the days.

Rooney is going to stay with Brandy while we are gone. Ugh. This little trip is going to be tough on all of us for so many different reasons. I'm worried about Cooper being gone for so long. He's never done that before. And this morning I went and did my Adrenaline class for an hour and when I got home he said, "Mommy! I missed you!" and hugged me. I'm thinking nine days might be a little rough on him.

So, this is what's going on this week:

We have a meeting tonight about a potential 5k run to benefit Harlie. I will provide more details tomorrow.
I have a meeting today with the teacher that put together Harlie's "My Name is Harlie" book for school. We are making another, up-to-date one this year.
I'm getting my hair cut tomorrow. Woohoo!
Then Harlie has a daisy girl scout pool party at our pool (the boys will go, too).
I'll pack the boys up and send them off Wednesday morning :-(
Harlie has a kindergarten screening appointment that morning with her new teacher (I'm very excited about our new set-up this year).
Then it's date night for Tom and I. We're going to see the band Train with some friends. I've been so looking forward to that! It's kind of become a "tradition" for lack of a better word to go out with friends before a big surgery. It's good to get our minds off it and to laugh and have fun with friends before the seriousness of surgery.
Then we pack up on Thursday and off we go.
Surgery is at 7:30am on Friday and we have to have her there at 6am.

We are staying at a hotel about three blocks from the hospital (not the same place we stayed last time, thank goodness!). And that is courtesy of our wonderful, kind and generous neighbors - John and Jackie Hudson. They are taking care of our hotel costs for the week. We are very lucky people for sure! Thank you so much John and Jackie!

And just to summarize what surgery this is (I've had a few people ask), here it is in brief:

It is called Fibula Free Flap Mandibular Reconstruction. They are taking a good portion of her fibula (apparently an unnecessary bone in between your knee and ankle) and the vascular tissue around it and implanting it into her jaw on the right side.

She's already had two jaw reconstructions - but they used her cranial bone - and with no vascular tissue. They were unsuccessful.

This is completely different and has a better chance of working because of the vascular tissue. They are going to connect the blood vessels in the graft (what's taken from her leg) to the blood vessels in her jaw. The hope is that the bone will have a nutrition source, and thus, will grow and heal.

They are also going to fix her left eye.

We are unsure if they are going to wire her jaw shut or not. And we are unsure if she's going to be in a cast due to the harvest of her fibula. Interesting note - when they take her fibula, they are not replacing it with anything. So her bone will come down from her knee and just end. And then her bone will come up from her ankle and just end. And nothing will be in between. Crazy, huh?

Okay, that's all I have time for now. More later! Thank you for caring about us!
~Christy xoxo

5 comments:

Christy, I'm keeping Harlie in my thoughts and prayers. I beam when I read about her accomplishments and wring my hands waiting for updates when the big stuff happens. I know I don't comment often, but I do keep up with the blog and facebook. You already know this, but you're so blessed to have her in your life. Thank you for sharing all of the ups and downs with us. I'm positive a certain little angel will be with her every step of the way.

Christy, please know this...if Cooperdoes seem to get homesick..I can take them home early....i hope i can keep them busy enough and show them a good time that all will be ok...if not, then plan B will go into effect. You have enough on your plate right now...all will be ok. And Harlie will be too! She is in competent hands and God will be taking care of her.

Much success on Harlie's surgery. All our thoughts and prayers go with you to Boston (but they are with you no matter where you go.) Grandma is going to have a blast with the kids at her house. Give kisses and hugs to Harlie and to all. Love from Pittsburgh, Ron and Sue

You will be in my thoughts. I really hope she's not getting sick. Why oh why does it always happen like that that they have something going on the week prior to surgery?! Please give Harlie a big hug from me and Ainsley. And hugs to you too. It's not easy.

Murphy

Murphy is 13 and is in eighth grade. He is constantly making us laugh with his crazy sense of humor and wonderful imagination. He is a great big brother and adjusted with no problems to this role. He has been an easy kid to raise from the get-go (despite the fact he entered this world 5 weeks ahead of schedule).

Harlie Caroline

Harlie is 10 and is in fourth grade. She has Goldenhar Syndrome, VACTERL Association and a lung defect that required the removal of 2 lobes on the right side. After over 50 surgeries (4 of them open heart), she is remarkably age appropriate. She is the sweetest, funniest little girl I've ever met. You can't help but fall in love with her.

Cooper

Cooper is 8 and is in third grade. He is a very talkative, high energy and affectionate little guy. He is all boy and he is a very funny kid. We are so lucky to have him!

Rooney

Rooney was born on February 5, 2012. He has been a wonderful addition to our family. He is such a great little dog and I just can't imagine life without him now! I love him so much!!!